Maybe?!!!!!

He has gone over six hours with a normal temperature!  Things are looking up.  I am so relieved.

You don’t get the right to tell me not to worry

He’s my child, you don’t have children.  Yes you have been a Dr for a couple of months but I have way more to loose than you do.  I can’t just wait and see what happens.  The Dr said 4 hours and it’s not my fault it took you two hours to figure out how to order the drug and another hour and a half to get it here from pharmacy and yet another hour and a half to get someone to give it to him.  Then give it to him wrong.  And I want to know if he spikes a fever after the 4 hours if that means it didn’t work or if that means we have to try again.  Yes I know you don’t know anything about this drug and that is why I explained to you I was sorry everyone was sleeping but it wasn’t my fault it took four and a half hours to give it when I should have known the answer by then.  So really me taking twenty minutes to find my inner self and relax isn’t going to matter.  Cause see I promised my son that this was it that he was going to feel better and get to come home soon.  So when you can even fathom what I am going through then you will know that I can’t just sit and wait and not worry and you have no right to ask me to.

Now we are waiting

Avery got his shot of anakinra at 9pm.  I got a little anxious since it was taking so long.  The Dr left at 4:30 and said he would be getting it.  We agreed to be in a study so they drew labs.  They had to sick him anyway for another culture and I figured if it could help someone else find an answer sooner then that would be nice. 

I kept looking for the shot to come and after about an hour the resident came in and asked the nurse if she was supposed to order it and she was so she asked the nurse if she knew how to order it, then wanted to know what the dosage was.  At that point I’d googled it and was ready to tell her.  So they drew blood and we went down to sono for his kidney sonogram.  We made it back to the floor at 7:30 and it was here waiting on us.  Unfortunately his nurses son was in the ER and had been hurt so she had to run.  She gave report to a ne nurse before she left and by 9  when we still didn’t have it I was freaking a little.  I really don’t want him to have another fever spike tonight if we can help it. 

So the charge nurse come in and gave it.  Unfortunately, she gave it sub d instead of sub q.  So she said she call the pharmacist and he said it would take an extra hour to work.  I just hope it does work. 

I guess we go to sleep and see if we have a fever in the night and how he feels in the morning.  They said fever relief in like 4 hours and then in a couple days everything is resolving.

Back to the ER

Sunday Avery had a great day.  It was the first day he walked spontaneously and I really believed he was on  his way to being well.  What I later realized was I gave him his advil an hour and a half early.

By 4pm I could tell he was starting to feel bad.  By 6pm I could tell the fever was back and he was really feeling bad.  He was back to not being able to move without pain.  At about 9pm he started having horrible shakes and his fever went up to 102.2, which was the highest it had been. He’d been on antibiotics for two days so I called the after hour nurse. She paged his Dr and called me right back.  Said the Dr said he was concerned enough that he wanted him to go to Children’s and I needed to  bring a bag.  I told her we were about two hours away but as soon as someone got to my house to take care of Zachery we would be there.

Mike met us at the hospital.  He was standing by the road so he could help me get Avery out of the car and into the ER.  We walked into the hospital at 11:30.  He was triaged and sent to the emergency department as a level 3.  We waited until 6 am to see a Dr.  After giving all the info to the resident, she ran off to find a Dr.  At 7 am an attending walked up will all kinds of tests and ideas.  We were admitted to the hospital and made it to a room by 1:30 pm Monday afternoon. 

Since then he has had nasal swabs, throat swabs, blood cultures, skin swabs, 3 chest x-rays, 4 EKG’s, an echo cardiogram, 3 different kinds of antibiotics, 4 iv’s and dozens of blood tests.  And with the exception of having the rhinovirus everything has been negative for infection. Some of his labs have been abnormal but they are ruling out so many really scary things.

So now eight days into a hospital admission and fifteen days since onset of symptoms I sit hoping to hear my son has Still's disease (Systemic-Onset Juvenile Rheumatoid Arthritis). 

I say hoping because his fevers are hitting 104+ now, he is still barely walking. It is horrible watching him go through this.  Right now he is spiking fever and I’ve had to sit away from him because I think I was making him crazy by touching him and asking if he was ok.  I just promised him this would be the last one and then he will be better.  God let that be true!

We added another ology to our team today, Renal.  They are doing a sono on his kidneys and a 24 hour urine collection.  They wanted to take him for the sono a bit ago but he started spiking a fever so we put it off.   They are open 24 hours a day. lol  I think they are sending in a pain management team to see if we can get him off the mortin. 

The first visit to the Dr’s office

The next morning I called the Dr’s office at 8 am, I was trying to win the first phone call lottery.  I made an appointment to see the nurse practitioner and took him in.  He was having a really hard time walking by then.  I was having to help him stand and walk.  He said his ankles hurt and his feet and his arm.   The advil was helping so I took that with  us I didn’t want him to miss a dose because as it was it was only lasting a couple of hours.  I also took the paperwork from the ER visit and the Rx that Dr wrote us which I hadn’t filled yet.  The nurse thought he had fifth disease which is a virus and it can cause pain in adults.  She told us not to fill the Rx for steroids, there were more side effects than what could help him.

So we went home and I gave him advil for the pain and watched him.  When the advil was working he could use his hands, when it wasn’t he couldn’t.  That was Tuesday after Labor day and pretty much the last day he got off the couch. 

The pain was bad.  He couldn’t do anything and the advil was only lasting a couple  hours.  On Thursday I called the Dr’s office and asked how to control his pain during this time.  The joint pain with the fifth can last for up to 4 weeks so we aren’t thinking anything different at this point.  He had started having fever, so I mentioned that.  They wanted to see him if he had three days of fever but gave me some different doses for the advil to help with the pain.

It was hard watching him like this.  I kept saying to him Avery I hate this!  No more sicky!  On Saturday morning we started on our forth day with fever so we headed back to the Dr.  He send us for some blood test and said he’d call me that afternoon. 

Avery’s once normal blood tests were now elevated showing an infection so his Dr started him on antibiotics and said if he still had the fever on Monday he wanted him seen by Infectious Disease.  

It’s a party, when dad goes to work.

At least that’s what he thinks.  And well some days it is.  I like getting out in the evening and ok I admit it I like soda.  So two weeks ago, not too long after Mike went to work, the kids wanted ice cream and I wanted a coke.  So I said come on lets go to DQ!  We didn’t have school the next day so why not.

I think the kids might have been in their jammies but I said throw on some shoes and lets go.  It’s not like I’d go in. I hate going in, I love the drive though. 

Avery was the last out the door and i was telling him to hurry so bugs didn’t get in the house.  He was putting on his shoes and said owe, his foot hurt.  I’m sure I thought ok whatever, or knock it off just put your shoes on.  I know I thought it was odd and kept asking him where it hurt.  I think I even told him to just not wear shoes, it didn’t matter.  I do know I asked if he just wanted to not go, we could stay home, but it wasn’t bad enough to miss DQ.

I didn’t worry too much about his foot, he was walking ok.  I did keep asking about it and tried to pinpoint where the pain was.  Then a couple hours later I had him sitting on the couch next to me and was talking to him about antagonizing his brother.  I noticed a rash on his arms and asked if it itched.  I couldn’t feel any bumps but again thought it was odd. 

My first thought was oh no he’s allergic to his new Axe body spray. But it didn’t look like when he had hives. But I went ahead and gave him some Benadryl and sent him to bed.   I checked on him before I went to bed and he seemed fine.  The next morning he said his left arm hurt, he couldn’t bend it.  His foot still hurt and the rash was now on his legs too. 

I called the Dr’s office and left word for the nurse on call to call me back.  I told her about his symptoms and that what worried me was that one of his pimples or bumps he has was infected and was in his blood.  He was having a hard time walking on is foot so she told me to take him to the ER.

I freaking hate the ER, it’s full of sick people.  And being a bit of a germophobe it’s not somewhere I want to be and I needed to take Zachery with us because Mike was sleeping for work.  We didn’t have long to wait and the Dr didn’t think it was too much to worry about.  They ran some blood tests and everything was normal.  He thought it was a side effect to medicine or some rare skin thing.  He also started him on steroids and said if he wasn’t better in a couple of days to take him to his Dr and that he’d like him to see the rash.  So we went home, after stopping at Sonic.

School Time!

I have to be up in six and a half hours to take Avery’s picture for his first day of his junior year.  I am so excited!  I still have things to get ready.  I need to put their lunches together and make sure the school supplies are in his back pack and charge the batteries for the camera.  Then I wait an hour and get Zachery up and do it all over again. 

Avery rides the bus but I will be taking Zachery to KINDERGARTEN!  Kindergarten?  How did this happen?  I know he was just born and laying in my arms.  Now he is in school all day and Avery is a junior in high school!

I will not cry!  I will not cry!  I will not cry!  I will smile and cheer and stay excited.  Of course I am excited to have the house quiet for a few hours a day, but that will get old fast. lol  What I am really excited for is to watch my sweet boys grow and learn this year. 

It is my favorite thing in the world.  Watching my boys grow.  I love watching them grow into young men.  I can’t wait to see how much they learn this year.  These are the absolute best times of my life and I am so very blessed that I get to watch every minute of them.  Thank you God for letting me be a wife and mom.